In Between Days

I know early adolescence is a difficult, challenging and complex time.

For the adolescents and the parents, that is. I never imagined that the health care system would find the whole kid-with-a-developmental-delay-and-autism entering adolescence such a huge challenge. But apparently, it does. I haven’t quite figured out how to maneuver through the place we’re in, in terms of health care for Georgia. Let me fill you in.

I fully realize that two things are true.

First, I realize that Georgia, while not ill per se, has confounded the health care system since she sputtered her way into it, all arms and legs, fourteen years ago.

As a baby she was low tone, but highly alert. She was mellow but strong-willed. She was quiet but when she cried, everyone heard her. Her scores on tests were good one day, and then the next day bad. The NICU pediatrician-on-call when Georgia was born spent the next week or so getting to know her little quirks, while she simply mystified and elated the rest of us.

That same pediatrician invited me to bring her to his practice once we were discharged. Secretly, I had hoped for that. In addition to being a smart, warm and personable physician who handled my baby the way a very experienced midwife would, he caught me the day after Georgia was born at what was, for me, a very bad moment and handled it with aplomb, with a mixture of Downton Abbey-style gentlemanliness, compassion and humour.

I had gotten out of bed to go to the bathroom and had, in the mirror, inadvertently caught sight of my back through the slit in my gown. Horrified, I froze on the spot. I believe I emitted a loud audible gasp. My entire back (and yes, all the way down from there) was covered in bright red angry scratches — as if I had been dragged along a bed of nails. Given that I had slept very little in four days, my reaction was to begin sobbing. The kind of loud, sloppy, not Oscar-worthy sobbing that you hope no one will witness. Without hesitation, he came into the bathroom to find out what was the matter and (having no dignity left) I simply and silently lifted my gown to show him my back (and oh, dear lord, the rest of me). I don’t remember exactly what he said, but he didn’t run away screaming, which was a good start. He also didn’t run to get the nurse — what many physicians, I suspect, would have done in the same situation. He looked at the marks, and told me that they were just stretch marks and that they would go away, probably completely.

He was right of course, they were — and they did. He made a joke, I don’t remember what – something lighthearted and a bit wry – but I remember really not minding that at all. He also (yes, he did) gave me a hug and brought me a cup of tea and … my baby.

And he stayed and talked to me. At that point, I would have taken Georgia to his practice if it was 10 hours away, believe me.

But I digress.

Because going back to the adolescents and health care problem, the second thing I realize is that all early adolescents are in a murky gray zone when it comes to health care, not just kids with special needs. For kids at this age, their evolving autonomy and yearning for independence means the paternalistic approach and cutesy teddy bear murals of a pediatrician aren’t quite right, but an adult-focused family doctor or internist might not meet their complicated developmental needs. Halfway between child and grown-up, their needs are tough to accommodate well.

And it seems that the health care system isn’t sure what to do with Georgia right now. That still-fabulous pediatrician has followed her and has worked with specialists to guide her through childhood, with lots of referrals for information and support. Realistically though, there isn’t a lot that can be done for Georgia during routine pediatric checks; she needs a different kind of continuity and support now. In some ways, she’s had that at places like Sick Kids and Holland Bloorview, but she is now at the age when even they scratch their heads to figure out ‘what she needs.’

So we’re in the midst of a conundrum. Let me explain. The developmental pediatrician at Holland Bloorview who we’ve seen since Georgia was three is no longer seeing outpatients. We haven’t seen her in about four years, since she referred us to a specialist for Georgia’s problem at that time: worsening dystonia (abnormal walking). About three years ago, Georgia was literally tripping over her extremely turned-in feet. The specialist was fabulous – lovely and smart. She’d take her own shoes off to walk with Georgia barefoot down the long hallway, in order to observe her walking. They’d chat and come back hand in hand, giggling. She asked my opinion about everything and we collaborated on figuring out what was going on with Georgia.

Four years, two drug trials, one lumbar puncture and a bunch of rare-metabolic-disease-tests-at-the-NIH-in-Atlanta later, we are no closer to figuring out what is causing her dystonia or how to ‘fix it’.

The long-term prognosis is anyone’s guess: it may stay the same, get worse or it may get better. Yep, we’re out of options to explain or treat the dystonia. So we do what health care practitioners have done since the beginning of time: We watch it. And since we’re out of options, we’re also now out of time with this specialist.

So in September, we asked for an appointment with our original developmental pediatrician. Now remember, her developmental pediatrician is no longer seeing outpatients. So we’re SOL, as they say (well maybe the kids say something else but SOL is still in urbandictionary.com so I feel okay about saying it): No physician, no appointment and no options.

I’m emailing the outpatient clinic nurse and trying to be patient and calm. But it’s tough. And suddenly, two things are happening. First, I’m being told that Georgia needs something different based on ‘her current needs’ but they have ‘nothing to offer’. Wow, really? Second, I’m feeling we’re being far too easily abandoned by an institution that has provided care for most of Georgia’s life — without any safety net in place.

The tough part is this: I understand some of these problems from an academic perspective. But when you deal with them personally, it’s tougher. I’ve spent a lot of time with students lecturing passionately about the lack of sustainability and continuity in the current health care system. About the fact that dogged chronic care and tedious health promotion and rehabilitation take a back seat to episodic acute care. Break a leg? It’ll get X-rayed and diagnosed and set. You’ll get follow-up at a fracture clinic and maybe physiotherapy. Have autism, a case of adolescence and a funny way of walking? No one’s quite sure what to do with you.

We persevere. We’ve had the good fortune to have encountered some wonderful physicians, nurses and therapists. But it’s sad to lose them as providers of care, without new, just-as-wonderful people in place.

I’ve always wanted good care for Georgia. We’ve benefitted from it and I would like it to continue. Maybe that’s unrealistic, but at least I know it’s possible.

I know that kind of physician is out there. The kind of physician who will see us through it all, who will share a joke, bring me a cup of tea and my cute little baby. The kind of physician who will hold that kid’s hand and help her walk barefoot down the hospital corridor. The kind of physician who will talk to me, and do everything possible to figure out this apparently impossible adolescent.